Sydney's Journal - November 2005
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Today seemed like any other day until shortly before dinner Mama noticed I was feeling a little warm. She took my temperature and it was a bit high. After my big scare last March, we've all been very concerned whenever I get a fever. This one was quickly becoming more serious than a little infection.
Unfortunately my regular doctor's office was closed so Mama rushed me down to the after hours pediatric clinic and Dada left work to join us. Sure enough my fever was well over a 100 degrees and was still creeping up. The doctor on duty was caught up on my history and was pretty sure that I had another bacteria in my broviac tube. In order to make sure they had to take more blood from my tube and a vein from my body. My veins are hard to find so it's really difficult for any nurse to stick me with a needle. They often have to do it several times. I really don't like needles. They brought me into another room and Mama held me while Dada tried to calm me down while they tried to find a good vein. I was beside myself in tears. I think I even saw tears in Dada's eyes. Fortunately the nurse was really good and found a vein right away so she didn't have to stick me many times. But it was still a horrible time.
After that they put me on another general antibiotic and medicine to bring my fever down. Within an hour or two the fever started going down and I started to feel better. They decided I was well enough to go home, but I was going to have to go see my regular doctor the next day. This broviac tube has been both a blessing and a curse.
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My doctor wanted to see how my blood was doing after my fever a couple days ago. Turns out, it really did a number on me. I usually average right around 5-6 weeks between transfusions, but this time I only lasted about 4 weeks, probably because of the fever. Apparently blood gets used up when your body is fighting an infection. Odds are there was probably bacteria in my broviac tube. We might find out tomorrow. In the mean time, I got another transfusion.
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The doctor's office called today and said that the tests confirmed that there was bacteria in my broviac tube, and therefore we needed to go to the hospital for further treatment. Even though I was feeling better they needed to put me on a course of antibiotics and keep me under observation for a few days. How disappointing. Mama had plans to take me back to Sea World tomorrow. What an unweclome change of events.
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I've been on antibiotics for a day now, and I'm still doing okay, but I'll have to be on them for several more days. They take really good care of us here, but man is it a boring place to be. I'm pretty much cooped up in my room with Mama all day. Every once in a while we go for a walk and at the end of the day, Dada comes from work to join us, but other than that it's really hard to be here. As bad as it is, though, at least I know I can go home in a few days. There are other kids here of all ages who won't be going home for a long time, or not at all. In the room next to mine there is a little boy who is very very sick. I think he has cancer. I hear him coughing a lot and it makes me very sad. Despite my blood problems, I am very blessed.
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My doctor decided that since the bacteria in my broviac tube was of a type that is likely to come back even after all the antibiotics, it would be a good idea to remove my tube altogether. So, today they brought me into the operating room and a surgeon removed the tube. Apparently, from what Mama said afterward, it took nearly three times the normal dose of anesthesia to knock me out for the surgery. The surgeon even told the nurses, "Whatever this girl has, she's going to beat it, because she's obviously got lots of fight in her." You better believe it. In the mean time, the tube is out. Eventually they are going to replace it with something called a port, but they wanted to wait until I'm done with the antibiotics. I'm a little sore, but boy is it nice to not have that darn tube hanging out of my chest anymore.
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My first day without the broviac tube made me realize that there is a down-side to not having it. I have to get stuck with needles again. They still have to give me antibiotics and before, they would just pump them in through my tube, but now that it's gone they have to go back to sticking needles in me. Like I said before, my veins aren't easy to find, and today was no exception. Eventually they found one in my foot, so I couldn't do much walking while I was hooked up to the antibiotics.
Fortunately, the hospital has several toy wagons for kids like me and Mama got me out of the room for a while. It was kinda fun to be carted around the hospital like royalty. Maybe I can get one of these for home. Speaking of which, I should be able to go home tonight. Woohoo!
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It's been about a week since I came home from my last hospital visit and things feel like they're back to normal again. It's Thanksgiving weekend and boy am I thankful. We just got back from visiting all of Mama's wonderful relatives at a family reunion and now we're relaxing at home. I took my nap as usual today, but when I got up this afternoon there was a tree in our family room! At least it looked like a tree. Dada said it was called a Christmas Tree and we were going to decorate it. It even had little twinkly lights on it already. Of course I found these fascinating and couldn't resist the urge to touch them. I can't wait to see what sort of decorations we're gonna put on this thing.